My son is 5 years old and was just diagnosed a few weeks ago with a DNA test, we have to wait nearly a month to get in to see the ot/pt/rehab doc.  I am totally feeling overwhelmed with all the decisions to be made in the upcoming months.  Just wondering if there is anyone out there in the Seattle, North of Seattle area with any experience at Childrens in Seattle.  Or just any advice about weighing all the options, I am already totally freaked by steroids, wondering if there is anyone who has not used them and what your experience has been, thanks!

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I have a 7 year old with dmd.  We have had him on steriods since he was 5 years old.  I still dont care for them but they seem to help because he is still up walking even though the hip muscles are gone.

Laurie paschal lives in the Seattle area, she may be able to help you. I haven't seen her on here lately - are you on Facebook?

Hi Iris,

I am in Seattle (Greenwood area). My son is 10 and we go to Seattle Children's. Please send me an email (abbyplustwins at gmail dot com) and we can talk more or I can give you my phone number.

Laurie

Sorry to hear... Both my sons have dmd ,13 and 9 .  13yo is still walking some and I hate steroids too but I don't think he'd still be walking without them.          A word of help .... the meaningless things in life just found there place, love your son every day and show him you love him. Help is out there and don't be ashamed or embarassed to ask for it. It took me and my wife 5 years before we got help,  luckily we're still here and together.

Join the Northwest group. You will find a lot of families from Seattle area.

Bob I totally love your word of help.  That is just beautiful.

 

Iris,

 

I know that right now everything is so confusing and like most of us your world seems completely out of control.  Repeating what many of these folks posted, YOU ARE NOT ALONE, I have found so much support and kindness on this site.  And I've met my very best friend and her remarkable son as well.  This is the one place where people will truly understand you.  Ask questions, talk to people, it really does help.  And if you need to cry or scream, we're here for that too.  I life north of Seattle near Everett.  If you ever want to sit down and just talk, send me a message. 

 

Wyatt was diagnosed in Seattle, but currently isn't a patient there.  However, in the last few years, I've learned a great deal about Seattle and the staff.  It's impressive, the care that they are providing just gets better and better.  Wyatt began steroids when he was 3 1/2.  He has always been small, but the side effects from the Deflazacort, seem very minor.  There is a temper issue, but he is only just about 5.  I don't regret my decision for steroids not at all, he runs, jumps, swims, climbs, etc.  The younger they are I think the fewer side effects there are. 

 

If I can give any advice, it's this, ask for Advice, before you go to your first appt, talk to lots of people on this site.  Ask them what a typical appt for their son is like.  Ask what types of tests they have done, ask what to expect, ask what to ask the doctors.  The more informed you are, the better you'll feel about the appt.  Initially, I was afraid to speak up, DMD hit us like a ton of bricks.  I didn't know that to ask, I didn't even really know what to do.  But I quickly learned that I am the person who will truly fight for Wyatt, his doctors adore him and care about him, but I am his mom and no one loves him the way that I do. 

 

Take care,

 

I'm sure you will find the support you need here, I totally did.

 

Love, Melissa  

I just wanted to thank you all for your responses, it's just amazing what a little support and understanding can do!  It is true Bob "the meaningless things in life DID just find their place" thank you for pointing that out, and I'm sure I will be connecting more here, what a great organization, so glad I found this site!!!  

bob said:

Sorry to hear... Both my sons have dmd ,13 and 9 .  13yo is still walking some and I hate steroids too but I don't think he'd still be walking without them.          A word of help .... the meaningless things in life just found there place, love your son every day and show him you love him. Help is out there and don't be ashamed or embarassed to ask for it. It took me and my wife 5 years before we got help,  luckily we're still here and together.

Sorry to hear about your little one.. My son has been taking Deflazacort since he was 6 years old and is now 21 years old.  I find with putting him on the steroid had help him stay walking and out of the wheelchair until he was 12.  He lives on his own now and so happy that he has the chance to experience that.  I hope this helps you out some, if you have any questions please feel free to contact me...

Take Care,

Penny

 

Hi Iris, I'm sorry to hear about your son's diagnosis! It really does get easier once the initial shock is gone.

Our 5 year old sees Dr Apkon at Seattle children's and takes deflazacort since he was 3.75 years old.  He has gained so much energy and strength from the steroids that I'd accept most of the side effects that could happen.  So far, we haven't seen any side effects other that slowing his growth. He wakes every day with a big grin.

Dr Apkon is inspiring and so reassuring - I remember her telling us to think about college for him ( a big step from our fears at his initial diagnosis and initial consult with the neurologist).  You'll be in great hands at children's, and if you want to talk feel free to send me an email.

I can understand worry about steroids, but for us the worry of NOT using them was far greater.

Erin

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